Shooting for the Moon with Ryan

Life in the World of Autism


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Dropping My Scrooge Attitude to Embrace Change

IMG_2419I started Christmas break with a Scrooge attitude. It was time for Ryan to be off from school for two weeks and I knew he was unable to handle less structure and the change in routine. I prepared myself for the inevitable potty accidents, meltdowns, regressions, and Ryan’s overall unhappiness with staying home from school. I count my blessings every day that Ryan loves school. And every year at Christmas time, I think about how nice it would be for Ryan to go to a year round school that had no breaks, if a school like that existed.

It’s not that I don’t want to spend time with my son. I just hate to see him struggling, unhappy, and unable to participate in certain holiday activities that are overwhelming to him. I wish that all the holiday traditions made sense to him and that he could enjoy all the decorations and exciting changes that surround him.

So I wrote out a schedule for Ryan each day of the break. I found that a schedule is one way to add structure and stability to Ryan’s days. There was a time for everything, including getting dressed, eating meals, and other activities. We crossed off each item as we went along.

As a family, Ryan, his dad and I went on hikes, took a trip to the zoo.

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We even stayed over night at a hotel on New Years Eve to get away from the loud fireworks. Fireworks are legal in our state. I knew each outing would be a struggle due to Ryan’s anxiety and sensory issues. He gets overstimulated in many environments away from home.

But we were determined to keep Ryan busy. And the only way we knew to help Ryan over being uncomfortable with being away from home was through gradual exposure. Some people call it exposure therapy.

It didn’t take long for my scrooge attitude to start fading away as I began to notice something had changed this winter break. Ryan seemed happier and more at ease. He actually enjoyed the hotel and jumped right into the indoor swimming pool.

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He smiled as he ate a slice of pizza at an over stimulating restaurant. He opened all of his presents on Christmas morning without anxiety over what unknown object could be inside.

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Could it be the very small dose of medication we were experimenting with to help Ryan’s anxiety was working? As the winter break went on, it became apparent that Ryan was more focussed, more verbal, and more able to cope. I honestly wasn’t expecting to see a dfference in Ryan. We had tried medications in the past and nothing worked. In fact, many times the side affects were worse than the problem we were trying to treat. Trying a new medication is always hard. My husband and I don’t want to give our child any type of medication unless it is absolutely necessary, ever. We almost gave up on it.

But we got to the point where we were concerned with Ryan missing out on life. He had just turned 8 in December, was high functioning on the autism scale, yet he couldn’t go to movies, restaurants, birthday parties, stores or many other places due to his anxiety. Basically, exposure therapy was not working. We could expose him to all of these places many times, but he wasn’t happy away from home and he wasn’t improving.

So we started Ryan on a small dose of a new medication for his anxiety and followed the advice of Bill Nason, author of “The Autism Discussion Page on Anxiety, Behavior, School, and Parenting Strategies.” You will also find him on Facebook. He wrote, “Only stay with a medication if it is having a ‘wow’ effect. . . If the medication is truly therapeutic, you will see significant improvement in your child’s mood, attention, or behavior. If you only see small changes, it is not worth putting chemicals into the child. If the medication is truly treating a biochemical imbalance in the child, you will see significant changes.”

As we continue through the New Year, the changes have been significant. My husband and I often look at each other and say to each other, “Who is this alien child who just came out of his room, is looking us in the eyes, and connecting with us by inviting us into his world?” Ryan is growing and changing with each day. It wasn’t too far into the Christmas break that I dropped my scrooge attitude and embraced the chance to spend quality time with my son.

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Nothing is perfect. And there is no such thing as a magic pill. Ryan’s behaviors still improve, then get worse again. He still has anxiety. But I notice that the medication is taking enough edge off of the anxiety so he can learn to cope. Our whole family is enjoying this pleasant and unexpected changes that will bring us many new surprises in 2016.

 

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Getting What Holidays are All About

DSC04254There was a time when holidays had no meaning for Ryan. He didn’t understand the concept of trick-or-treating, and he was finished after ringing three door bells. He had no idea we were celebrating Thanksgiving and certainly wasn’t going to eat the turkey since it wasn’t one of his three preferred foods. Ryan wasn’t aware when it was the Christmas season, wasn’t interested in opening presents, and found all the lights and music over-stimulating.

But as time went by, Ryan finally started to get what holidays were all about. Last Halloween, Ryan couldn’t get enough of ringing door bells and looking inside of other people’s houses. He would have run in if had they let him. When he got home, I let him eat six pieces of candy. I was thrilled that Ryan actually wanted to eat candy, which doesn’t seem to make sense until you live with a child whose food choices are extremely limited.

This year, at age seven, Ryan finally gave me an answer when I asked him what he wanted to be for Halloween. For the first time, he cared about what he was going to be. When he made the request to be WALL-E, I was beside myself with excitement. I actually got to make him a costume instead of searching for any costume he could tolerate sensory wise.

I learned my lesson when Ryan was two years old. I found the most adorable lion costume at a consignment sale. It had a furry coat with an attached hood and mane. It even had furry pants and paws that fit over his shoes. Ryan could barely look at the costume, let along put his arm in the sleeve. I quickly turned him into a farmer instead, with a bandanna and denim overalls.

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I sold the lion costume back to the consignment sale the next year.

The first year that Ryan decided to eat turkey was exciting for the whole family.

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He had been doing feeding therapy for at least six months and his food choices were no longer limited to yogurt, hot dogs and grapes. Ryan also found out that he loved parades, even though they were loud and crowded. The drums in the marching bands were thrilling. The giant balloons, floats, and performers were all amazing to him.

As a preschooler, Ryan had no interest in presents or opening them. He had no idea what he wanted for Christmas at all. In fact, Christmas was just another day to him. He didn’t get the concept of celebrating a holiday. Yes, we saved money on Christmas presents when Ryan was little. But we all missed out on the Christmas morning magic.

Then, when Ryan was five, he surprised us by saying out of the blue “I want a train that goes around the bottom of the tree.” It was Christmas Eve and the first time Ryan ever requested anything for Christmas. I was overjoyed, and determined to get him what he requested. I ran to Wal-Mart to grab any type of train that was available. At the last minute, I was only able to find a small plastic battery operated train that fit on his wooden “Thomas” tracks. It was enough to fill Ryan with delight on Christmas morning.DSC07961

This year, Ryan is already asking about the real Santa vs. one of Santa’s helpers. Every time he sees a Santa Claus, he wants to know if he’s the real thing, because the Santa he saw at the store looks different from the Santa at the party. Ryan has only believed in Santa for a very short time. Is he already questioning it?

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Ryan has come a long way from not knowing the difference between a holiday and a regular day to participating in many of the holiday traditions. So what new tradition will finally have meaning for Ryan this Thanksgiving and Christmas season?  The greatest joy of celebrating a holiday with Ryan is watching him latch onto an aspect of the holiday that he previously didn’t get, which always makes the season even merrier and brighter!

 


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Gift Buying Can be Easy if Your Child is on the Spectrum

IMG_1550Ryan finally opened his Easter gift yesterday, about a week after Easter. He devoured his skittles, M&M’s and lollipops, the only three candies Ryan likes. (Children on the spectrum are very particular about what they will eat.) But he would not touch his wrapped present. He has to be in the mood to open it. And I have to tell him what’s inside, because he doesn’t like mysteries. How does he know a snake won’t jump out at him?

In a way, buying presents is easy for many parents of children on the spectrum. We don’t have to buy them. Many children with autism just aren’t interested in toys. Presents never had a lot of meaning to Ryan. But I, like many other parents I’ve talked to, just can’t not put a present or two under the tree at Christmas or a present in the Easter basket.

Again, Ryan has to be in the mood for present opening. That happened yesterday. And, as he gets older, he’s finding that he actually likes the presents he’s unwrapping. He loved the basketball hoop that can be placed over his bedroom door. Ryan fell in love with basketball after participating in “All American Athletes,” a local non-profit program for special needs children that meets weekly and teaches kickball in the fall, basketball in the winter, and t-ball in the spring. I’m so thankful for that program and the volunteers that helped Ryan become interested in sports.

Easter is a little different when you have a child on the spectrum. We were careful not to mention the Easter Bunny, because Ryan would only worry about a large bunny entering his house in the middle of the night and making a lot of noise. But on Easter morning, we told Ryan that he had an Easter basket. He wasn’t the least bit interested and ate his breakfast and got dressed before he even glanced at it. He didn’t really look at it until after church.

By the way, Ryan LOVES church. We couldn’t be happier. Ryan loves the structure and the predictability of it. He now likes the music (the organ used to be too loud), the children’s sermon at the front of the sanctuary, and Kid’s church. Ryan is finally walking to the front of the church on his own when it is time for the kid’s sermon. In the past, I walked him up the aisle and showed him where to sit on the floor in the front. The first time, Ryan wanted to run up onto the stage and join the choir. But now Ryan is walking to the front all by himself and actually telling me not to come.

Church hasn’t always been this easy. We could attend church when Ryan was young enough to be in the nursery. But when he got too big, we faced a lot of opposition from our little boy who is sound sensitive and couldn’t handle the organ music, the singing choir, or the amplified voice of the minister. For awhile, we just didn’t attend church. Then, when we felt he was ready, we slowly introduced him to the church service. We walked through the sanctuary on a Saturday when it was empty. He sat in the lobby of the church several Sundays where it wasn’t as loud but he could hear the sermon and music. Ryan’s ABA therapist came to church a few times and helped Ryan get used to the service.

Now Ryan is a pro at going to church and loves it. Sean and I spent our Easter laughing about our silly little boy who loves going to church, but has no interest in his Easter basket or present. Life with Ryan and his unique, creative brain is not bad, just different. We wouldn’t change it for the world.